Bill Aims to Improve Access to Care for Sickle Cell Patients

WASHINGTON — A new Senate bill, the Sickle Cell Care Expansion Act, would provide educational incentives and create competitive grants to help grow the number of health care workers trained to care for sickle cell disease patients.

The lead sponsor of the bill is Sen. Chris Van Hollen, D-Md., who had a member of his staff, John Amara Walters, die of complications from the disease in 2021. 

Walters, who had risen from intern to legislative aide, was just 29 when he died.

Joining Van Hollen in introducing the bill are Sens. Cory Booker, D-N.J. and Barbara Lee, D-Calif.

If it becomes law, the Sickle Cell Care Expansion Act would offer loan repayment assistance and scholarships to students studying benign hematology, which is the specialty under which sickle cell disease falls.

The incentives are designed, in particular, to meet the treatment needs of the growing number of adult sickle cell patients.

The bill would also create competitive grants to increase awareness about sickle cell disease and would provide additional resources for hospitals to fund support services for young adults, aged 18 to 29, transitioning from pediatric to adult care, as well as research into the needs of this patient population.

“For Americans living with sickle cell, access to their doctors and treatments can be one of the biggest challenges they face,” Van Hollen said in a written statement.

“And while medical advancements over the years have enabled these Americans to live longer, the supply of care simply hasn’t kept pace with demand,” he continued. 

“This bill will help close this gap by increasing the size and capacity of the medical workforce that is trained to treat sickle cell. Better care is out there for sickle cell patients and their families, and our legislation will make it more accessible,” Van Hollen said.

Sickle cell disease results from a genetic mutation that causes an individual’s red blood cells to distort into a C, or “sickle” shape, reducing their ability to transport oxygen throughout the body and causing serious symptoms such as intense pain, infection and stroke. 

The Centers for Disease Control and Prevention has estimated that at least 3 million people in the United States have the sickle cell trait which can lead to sickle cell disease, including one in 12 African Americans and one in 100 Hispanic Americans.

Approximately 100,000 Americans are currently living with sickle cell disease, with Van Hollen’s home state Maryland having the fifth largest population of sickle cell disease patients, at approximately 4,860. 

Sickle cell disease has primarily been considered a childhood disease, as most patients have not survived to adulthood until recently as treatments and therapeutics have advanced. 

As a result, there are fewer specialists to treat adult sickle cell disease patients than pediatric specialists, which is a key reason why Americans with sickle cell between the ages of 18 and 30 are more likely than any other age group to end up in the hospital multiple times because of their condition.

“Far too often, people living with sickle cell disease face systemic barriers to accessing the care they need to live full, healthy lives,” Booker said in a statement. “I am proud to join my colleagues in introducing this bill … so we can help improve outcomes and quality of life for those living with this disease.”

Since Walters’ death, Van Hollen has been working with advocacy organizations and his former staffer’s mother, Kimberley Davis, co-founder of the nonprofit KMD Advocacy Center, to advance efforts to defeat the disease.

Davis said in a press release she believes the legislation the senators are sponsoring will provide “impactful benefits” to the “community of sickle cell treatment and care in all 50 states where individuals and families living with sickle cell reside.”

The legislation has also been endorsed by the American Society of Hematology, Maryland Sickle Cell Disease Association, Sickle Cell Disease Association of America, KMD Advocacy Center, Johns Hopkins School of Medicine and Loma Linda University Children’s Hospital.

“It’s more important than ever that we combat sickle cell disease through comprehensive care and outreach, especially in communities of color and those who are medically underserved,” said Lee in a written statement. “I’m looking forward to advancing this legislation … because it will encourage more doctors to engage in vital scientific research, outreach, and care for sickle cell patients.”

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